I went back to the doctors who called the consultants secretary to refer me again and my doctor was basically told that I would have to go through the whole referral system again. Previously they said my doctor could just ring them up directly to arrange an appointment. Why say it if it's not true.

The main thing is that I finally have another appointment for a test. It will be a spot test as before.

I was wondering, is it advisable/worth me collecting a 24 hour sample myself and using that to take a sample from when they give me the collection pot at my appointment? Or do you have to put the acid in whilst even collecting? I would start collecting 24 hours before my appointment. Last time I just gave them a spot test sample and they added the acid in afterwards.

I am also going to speak to the consultant about why they haven't given me any figures for my last test. My doctor and I both thought it best to ask them face to face. Although it appears my appointment is with a different consultant this time.

I rang and spoke to a clinical scientist at the metabolic laboratory at Sheffield's Children Hospital.

I was told the following:

They advise, if possible, a sample from a collection period of 24 hours.She said it's better than a spot test as it can fluctuate, so 24 hours is better.

Hope I explain this next bit right...

She said that because results are given to doctors as showing the result being from a sample (of the 24 hours), consultants have assumed that only a spot test is required but really their understanding is not correct. Fluctuation means it's better to do a 24 hour test and then test from a sample of that and not just a from a spot test.

She said most should provide a 24 hour bottle with some acid in it for collection.

I asked her about collecting over 24 hours myself and then having them put the acid in it at my appointment. She said it needs to be fresh, so as long as it's the 24 hour immediately before my appointment and they put the acid in it straight away then it should be okay but if it's not the immediate 24 hours or they delay in putting the acid then this would affect the result.

I asked her about getting figures for my results and she said that she isn't allowed to give them to me and that the consultant would have been given a letter with the figures and then explaining at the bottom whether the test was positive or negative.

She said that the figures don't really matter, the important thing is what the result actually shows. I told her that they matter to me and as they are my results I have a right to know them. I forgot to ask what if the numbers are borderline? The result might be given as negative but actually be so close to positive. I tried calling again but can't get through. I'm sure I should have asked more.

Since my last post, I have seen another consultant, one who was so much more informed about both tmau and sample collection and who had contact with Dr Lachmann. I was asked lots of questions and I was assured that even if it ended up not being TMAU, it wouldn't be left at that. I was having symptoms and those would be investigated with other tests.

I also got the results of my previous negative test. I don't feel like posting these yet but I will at some point.

The consultant explained the 24 hour test and how it's important I follow the collection instructions exactly and that it's vital I don't miss a collection in that time because that can skew the results. It's important for them to know the volume that you actually pass.

I had to go and get the bottle myself from the path lab. That was a horrible experience which I really don't want to go into, maybe another time.

Now I'm waiting for my results. Then I will have another appointment with the consultant to discuss what happens next, which of course depends on the results.

I won't lie. I really want them to be positive. For myself, I feel like that's the only thing that can explain this. In my mind there is nothing else with those symptoms that would be accepted by others or that I could 'justify' my symptoms. Not that I need to justify them but yeah I do, to myself and to others. Otherwise I am just a ...

Do you think this consultant is more 'community friendly' than Dr Lachmann ?

I think the chances of being negative are very high.New test just doesn't seem to pick up the 'outliers / transients ' anymore.In Holland the lab does the DNA test first, and regards the urine test as 'unreliable' (I agree).

If you could get the DNA test done somehow, I would guess you carry 2 or more of the common variants or some other 'variant combo'.They are taught this is still not enough to make a person 'potentially smelly', but I think they are mistaken.